Aug 25, 2015

What happens when your give a damn, doesn't give a damn?

Alrighty... I tend to talk about the physical effects of Parkinsons a lot, but not that often about the emotional, cognitive or behavioral stuff.  I think mostly because those are the ones I almost prefer to pretend don't exist.

Let's start with Apathy... Hmmm a word that I don't think I ever used before life with PD... For those of you unsure of it here's the definition:
1.  absence or suppression of passion, emotion, or excitement.
2.  lack of interest in or concern for things that others find moving or exciting.
I have always been a go getter type.  Focused and ready for a challenge.  I worked hard to overcome any obstacle in life and particularly my career.  I even remember applying for my first Sales & Marketing Management position and being told "there's no way you'll get that job, you're not old enough" and to that my 22 year old self said "watch me".  And yes, I landed that job, and many other great advancements after.  The word can't wasn't in my vocabulary, but the words motivation and determination most certainly were.  Now things have changed a bit and I guess the first part is admittance, so here goes... 
My name is Natasha and my give a damn doesn't give a damn much anymore.  I am the biggest procrastinator in the world now because I can't seem to get focused on a task at hand.  Sometimes even with things I'm extremely passionate about I simply can't get started, don't want to and lack the motivation to get at it.  I remember my movement disorder neurologist asking at one of my appointments that my husband came to if I had lost my motivation.  I had even asked my husband that previously when reading about this stuff and he told me that I did not have the 'spunk' I once had. :-( sigh.... I knew it, but thought maybe it wasn't as bad as it was.  He promptly agreed with my doctor that day that I had indeed changed in that regard. 
To back track a bit to my life before Parkinsons...  I was the woman in the 4" stiletto's who stood tall, walked loud and could storm any office building anywhere in the country for any type of meeting and typically achieve the results I set out for.  Confident, outgoing and with a firm handshake.  Now, I have trouble making eye contact with people.  Even people close to me.  I cannot explain it, I notice it ALL the time and I hate it.  Yet despite knowing it I can't seem to change it either.  I'm less confident and much more nervous than ever before and here it goes... since I'm being honest I might as well go all the way, I suffer from anxiety now too.  Lord, I said it... It's mild mind you but I never had an anxious bone in my body before, in fact I didn't really understand what it was like for people when they would talk about having anxiety, now I have a new perspective and empathize. 
I have no clue where anxiety came from, where the lack of motivation or interest came from, why I can't make eye contact anymore or why I procrastinate on everything imaginable.  However all those things are my new reality.  I think part of why I'm always on the go despite the fact I suffer with exhaustion and sleep deprivation is my lack of wanting to admit the reality of cognitive and behavioral changes.  I know they are all part of Parkinsons Disease but having a clear cut explanation for it doesn't really explain it well for me none the less.  They are all things that are not my personality that I've known all my life, not typical traits for me and to be frank none of them are things I like about the new me.  But the reality is that although I am still extremely passionate about many things in my life, including my children, husband, fundraising and community involvement to some extent my give a damn got up and left.  I know that's very contradictory to be passionate about things and say that in the same sentence and trust me it baffles me too! 
And then there's the voice.  Well I'm thankful that I do not have speech problems like many of my fellow Parkie friends who have a difficult time getting their words out, stuttering etc... I hope & pray that doesn't eventually happen to me.  However there have been drastic changes in my speech none the less.  My voice continues to get softer as time goes on.  My husband and my children continue to always say "what" when I say something to them and consequently tell me they can't understand me because I'm mumbling or talking too softly.  At first I thought they were all nuts, who me?  The loud mouth?  The girl everyone always laughed about because you could always hear me coming?  How could it be possible that they cannot hear me because I'm talking to quietly?  Craziness.  But alas it's true.  I'm extremely conscious of it because I'm reminded of it a million times a day at home by my family.  So when I am in a public setting I actually focus my thoughts on projecting my voice so that people don't have trouble hearing me.  It's just another way that PD has changed who I am, how I act and how I've always been.
You see this journey with Parkinsons is quite a ride really.  You figure things out as you go.  New 'symptoms' appear as time goes on and older symptoms or behavioral changes make sense after you get diagnosed.  Throughout the journey you learn to adapt, try new things and continue to research to to move forward with a life you want despite the disease.  There's so much more to PD than shaking, balance issues, stiffness/rigidity and posture problems.  Thankfully most of those issues are treated well with PD meds so when you are "on" your body can work great, even almost like it did before in my case until the "off" time hits and the next dose is ready.  But having your personality change, dealing with cognitive issues, memory issues, apathy and anxiety those are sometimes harder pills to swallow than my little yellow friends I take to survive a regular day.  They are some of the struggles that really bother me by times, particularly when I notice I'm not making eye contact with someone and don't understand why. 
So, today's my day where I just put it all out there.  The day I'm fully honest and although I may not understand why Parkinsons does these things, it does and I just have to deal with it.  And admit that despite a Mrs. Mumbles voice and sometimes the lack of much 'get up and go' that I'm still me, I still care, love, hurt and laugh.  I still love a good joke even if I'm the punchline and Parkinsons will never change that! 

LOL sad but true... but thankfully I usually find it again!  ;-)